Category Archives: NHS treatment

When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not neccesarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

The theme for this year’s “World IBD Awareness Day” on 19th May was “Improving quality of life for people with IBD” and in particular the importance of Specialist IBD Nurses who can make such a big difference to patients’ lives.

My own experience of IBD Nurses is fairly limited. I have been lucky enough to only need to contact them with simple questions by ‘phone or email. I know, from conversations with other IBD patients, just how much support some get when they need help. I say “some” because not all patients have access to a specialist nurse and/or a helpline. A fellow IBD’er ran a poll on Twitter and as you will see from the results a significant percentage of patients are missing out.

I’ll return to this point at the end of the post.

Last week saw “International Nurses Day” (12th May). It was an opportunity for patients to take to social media to express their thanks, publicly, to nurses for the care they have received. (I would hope that patients thank their nurses face-to-face anyway).

I would usually fight shy of naming my nursing heroes. Patient confidentiality works both ways but there are two nurses who made a huge difference. If you will indulge me over the next few paragraphs I will explain their significance.

I’ve broadened the definition of “specialist IBD nurses” slightly to include stoma nurses as it neatly allows me to combine both the subjects of this post.

Whilst stomas are not the sole preserve of IBD patients it is a sad fact that many of us will end up with one, temporarily or permanently, at some point. I’d like to explain how the right support at the right time made a real difference to what could have become a very difficult period of major adjustment – getting stoma’d.

In August 2010 I had already been warned that I might come out of the operating theatre with one and to that end I had met with Fiona, the first of my nursing heroes, one of the stoma nurses based on the 12th floor at St.Thomas’ Hospital. She had spent time with me during the pre-op period explaining just what wearing a “bag” involved, some of the challenges I would face, answered my many questions and then marked the optimal site on my abdomen for the surgeon to aim for.

Coming round in Recovery, post-op, it wasn’t a great surprise to find the worst had happened. For those first couple of days after surgery you are so high on a cocktail of drugs that seeing your own, living stump of intestine poking its way through your abdominal wall is somewhat surreal. It’s at the point when your consciousness returns to some form of normality that reality hits and you need all the support you can get to start coping with this alien being and alien lifestyle. The thought of carrying round a bag of s*** fixed to your waist…..

Calmness and confidence are the order of the day. Fiona provided both in pouch loads. Nothing flustered her and that positive attitude transferred across. (Well, I like to think it did, but reading her ward notes from the time proved that reality may have been slightly different). She patiently visited me each day until she was confident that I could manage on my own.

Wind forward to the day of discharge and suddenly you’re home, alone (metaphorically speaking). It’s down to you to manage without the immediate support available on the ward. Fiona gave me a follow-up call to make sure everything was going OK and at this point my care was handed over to the local stoma nurse. This was Julie, my second nursing hero, based at East Surrey Hospital. She made contact shortly after my discharge and came to see me a couple of days later. She immediately put me at my ease and like Fiona was calm and unflappable.

I saw her on several occasions, not always in the best of circumstances. There was the time when my bag started filling with bright red blood, and the time when the stoma started prolapsing, oh, and the odd leak. Each of these problems could have knocked my confidence for six but each time Julie had a solution and some comforting words. By the time I was ready for the reversal operation I had become completely at ease with my lot.

There was never any question of a stoma nurse not being available either in person or at the end of a ‘phone. Why should it be different for Specialist IBD Nurses? I wonder if it comes back to the old idea of IBD being the “invisible” disease. Stomas are visible; tangible. For many IBD patients, those who have not undergone surgery, you really wouldn’t be able to tell they were suffering from IBD just by looking at them. Maybe that’s why IBD is not given a universal high importance.

You would think that providing these services would be a “no brainer”. Even if we ignore the advantages to the patients themselves then surely they must make sense on purely economic grounds. They act as a filter between the patient and the consultant. This will alleviate some of pressure on consultants’ time and potentially avoid the need for booking short notice outpatient appointments which inevitably means overloaded clinics. They may even reduce the number of visits made to the frequently beleaguered Accident and Emergency Departments.

I guess that it is all down to squeezed budgets and IBD not being sufficiently high profile to make it a political “hot potato”. This is why we need IBD Awareness Day.

Starting with a blank piece of paper I put down the most important things I expect and what I consider to be acceptable timescales. I concentrated on my needs as a hospital outpatient with multiple chronic conditions as this is a situation I find myself in. (I’ve excluded GP’s, as I very rarely see them, and I’m hoping that in-patient hospital stays are few and far between).

Before reading the list below you might like to have a go yourself and then see where we agree or what additional items you’ve come up with. I’ve ended up with 12 key items. Here they are, in no particular order :

Easy to book appointments/tests/procedures and carried out within a reasonable or appropriate time frame (4 weeks?)

Consultants that make you feel welcome and are prepared to spend sufficient time to answer your questions

Consultants who communicate at the appropriate level of detail. (Communication includes the ability to listen and “hear” what is being said)

Consultants who take joint decisions with the patient. (You are the expert in YOUR health, THEY are the experts in their chosen fields and provide the knowledge to inform decisions)

Good co-ordination between multiple consultants if more than one condition is being managed with a named lead consultant who co-ordinates your care

Ability to make suggestions to / ask questions of / get responses from consultants by email

Follow-up letters sent out promptly

Test results communicated promptly (or appointments organised to go through results as soon as they are available)

Appointments that start on time or if they are delayed then patients are told why they are running late and how late

Provision of a disease/condition specific help line with prompt response time (within 24 hours)

Routine appointments over the ‘phone or by Skype (to save on hospital trips and consultant’s time)

11) and 12) are more long term aims and probably the remit of the NHS as a whole rather than an individual hospital. If there are any blindingly obvious omissions please let me know. You can tweet me at @crohnoid

…and how does my treatment measure up? Having established the list (and the two aspirations) I thought I’d see how my current treatment measures up against each of them.

1) Appointments are easy to book either on the ‘phone or in person but not all departments are consistent in their approach to routine, six monthly appointments. Some give you the appointment letter there and then; others won’t book further than six weeks ahead so I always make a note in my calendar of when I need check that I’m on the six week radar. So far I haven’t had any problems and nowadays you recieve text messages and/or telephone reminders of your forthcoming appointment.

2), 3) and 4) The communication with the various consultants has always been excellent. I’ve never felt I’m being hurried out the door. We always have a full and frank discussion at a level of detail I can cope with.

5) Co-ordination works well. Letters and emails are always copied between the three main consultants and there is a MDM (Multi Disciplinary Meeting) were patients are discussed.

6) I’ve always received prompt responses to my emails. If I have a question that I think may have implications across disciplines then I copy it accordingly.

7) I did have an issue with follow-up letters from one particular department but a simple email to the Head of Department sorted that out. It’s all resolved now and we’re back on track.

8) There have been a few problems with test samples being mislaid or the original sample not being suitable for testing. One of these occurences meant that I had to have a second bone marrow biopsy, not really an experience you would want to go through more than once. The mere mention of the procedure makes my gastro consultant squirm.

9) Late appointments are the biggest problem, made worse by there often being no communication to the patient as to what is going on. These seem to be worse at Guy’s. The new Outpatients Dept. at St.Thomas’ has large screens all around the waiting area and these carry messages if any clinics are running more than 30 minutes late (although this isn’t always the case).

10) I’ve only had reason to contact the IBD and Stoma helplines. Both have replied very quickly. When I had a problem with my stoma I was able to go and see one of the nurses the same day.

11) Video appointments are more an aspiration than something I think will happen in the very near future. I don’t know at what level the decision has to be taken to implement it – Departmental ; Hospital Trust; or from the NHS on high.

12) The electronic medical records system works within the Guys/St.Thomas’ (GSTT) itself but they do not have access to my previous records held in Croydon and East Surrey Health Authorities. This was brought home to me when I was admitted to my local hospital. Fortunately I had taken it upon myself to collate this information and was able to pass the key facts to the A&E Registrar and prevent a lot of uneccesary tests that would have just confirmed already known about conditions.

Conclusion

I’m very impressed with the treatment I receive from the NHS at GSTT but it is let down by the lack of communication when outpatient clinics are running late. In the original version of this post (2014) I gave them a score of 9 out of 10 but now I would reduce this to 8 out of 10 simply due to poor communication on late running clinics (2018).

I have had the odd hiccup along the way but by taking an active role in managing my treatment they have quickly been sorted out and never caused a problem.